I have an appointment for my 1st infusion the new MS drug. The date is August 10. I referred to it as the new MS drug because my voice software can't do the name of it correctly. It is very tedious to correct things that I'm dictating. Sometimes I just get so tired of fighting it that I just leave the mistake. My wife is pretty happy about it and she has done a lot to coordinate my primary care physician and the neurologist. When we go to one you tell them to send the records to the other one but somehow that gets forgotten. Without my wife expediting things I probably still be waiting this time next year. I want to discuss the effect emotionally on me about this new drug because it is not what I expected.
One thing I can say is that my mother was from Missouri, the show me state. I've always had this attitude and mindset of "show me the results". We started up this process for the new drug quite a while ago. I have had a lot of time to think about it and I think that is been difficult for me. Since I was diagnosed I have read and been told over and over again there was no hope of any medical solution in the works for my type of MS. I have primary progressive and I came to terms with that a few years back. I learned to accept what it is because "it is what it is" and everyone's is different. Now recently I've been faced with the prospect of a medical treatment that may or may not prove effective. Only way to find out is go through it and see.
So I fought a mental and spiritual battle for quite a while now thinking about this new drug and unfortunately reading too much about it. I don't want to get my hopes up because I accepted what I have. Now I'm fighting the battle of dealing with the "what if this, but if that" scenarios. He mostly I've been all over the map. I'm afraid to hope but they keeps creeping in. Will I get the use of my right hand back so I can drive my own chair, feed myself, scratch my images, throw the ball for the dog, scratch the kitty ears so she likes me again and be less of a burden on my wife. Then I wonder what if it works even better than I can get out of my chair on my own again. That I wonder what if it doesn't work at all and all this rigmarole has been for nothing. That I wonder will the drug infusion make me ill. Not sure that part really bothers me much because at this point I'm willing to try anything. Other worries are, what about infusion number 2 and the follow up infusion is not comped to me by manufacturer as the 1st ones are. But I wonder why does an insurance cover it and will they in the future. The cost is ridiculous and if we have to pay for it it won't be possible.
So I really struggled for the last couple of weeks because I keep looking at the circumstances I'm surrounded with and burdened with along with my wife and kids. I have not been praying and reading the Bible very much and have suffered spiritually because of this. When I am spiritually close the Lord Jesus all these trials I'm going through seem like "light affliction but for a moment". Last couple weeks I've been trudging through this morass on my own and is not so easy to get back to trusting the Lord. I was diagnosed in 2009 and never expected anything to be approved medically for my type of MS in my lifetime. This new one was a surprise to me and I wish I could be more optimistic but of course I'm afraid of hoping to much. I've always found that being optimistic and hoping lead to "crash and burn's".
Please pray for me that I can handle these ups and downs a little better than I have been. Thank you so much in advance!
Phil and Macy
Monday, July 31, 2017
Thursday, July 27, 2017
MS Update – breathing machine and miscellaneous
I couldn't post yesterday because I forgot to have the TV muted. My wife was able to get my breathing machine working. She got a few ideas from the breathing machine lady but when they came right down to it she doesn't know what she did to get it going. I told her that's how I often think things in years past. I just take things apart and fiddle around with them and when I put it back together somehow it works. I can't believe all use to it I have become in just a week. I especially noticed that in the mornings.
I like the page that pertains to the new drug for MS that I am working toward. It is on face book. I might have to turn it off my newsfeed because there are so many posts is ridiculous. I'm glad for the information but I had to quit reading all of them because it just took too much time. The number 1 side effect seems to be fatigue for days after the infusion. The number 2 seems to be itching in the years ahead during the infusion. They give you Benadryl and that is when I take because I have MS itching now when I go to bed. Hopefully I won't have that problem or my wife will be on scratching duty during the infusion. I will have to remember to take the scratching do Hickey I bought a long time ago.
Well I can't think of anything more to post about MS lately. I did read a headline on Facebook from the MS site the talked about looking for the silver lining in MS. I would say categorically I find no silver lining. MS socks and anyone who tells you different is just sharing wishful thinking. I have learned things I wouldn't have without MS but honestly I don't find any silver linings at all. I have learned to appreciate my wife and other caregivers but I would not call that a silver lining. I wish I can do some of the things for myself and I feel like a burden. So you silver liners out there please poke yourself in the eye with a sharp stick! That's humor if you cannot tell.
I didn't think of something else about MS. I think perhaps I'm going a little bit stir crazy. Don't just a minute ago I thought today was Friday. I sent an email talking about trying to go to listen to music. Since I thought it was Friday today I put in the email, music tonight. I realized today is Thursday.
I like the page that pertains to the new drug for MS that I am working toward. It is on face book. I might have to turn it off my newsfeed because there are so many posts is ridiculous. I'm glad for the information but I had to quit reading all of them because it just took too much time. The number 1 side effect seems to be fatigue for days after the infusion. The number 2 seems to be itching in the years ahead during the infusion. They give you Benadryl and that is when I take because I have MS itching now when I go to bed. Hopefully I won't have that problem or my wife will be on scratching duty during the infusion. I will have to remember to take the scratching do Hickey I bought a long time ago.
Well I can't think of anything more to post about MS lately. I did read a headline on Facebook from the MS site the talked about looking for the silver lining in MS. I would say categorically I find no silver lining. MS socks and anyone who tells you different is just sharing wishful thinking. I have learned things I wouldn't have without MS but honestly I don't find any silver linings at all. I have learned to appreciate my wife and other caregivers but I would not call that a silver lining. I wish I can do some of the things for myself and I feel like a burden. So you silver liners out there please poke yourself in the eye with a sharp stick! That's humor if you cannot tell.
I didn't think of something else about MS. I think perhaps I'm going a little bit stir crazy. Don't just a minute ago I thought today was Friday. I sent an email talking about trying to go to listen to music. Since I thought it was Friday today I put in the email, music tonight. I realized today is Thursday.
Tuesday, July 25, 2017
Breathing machine ups and downs
There are so many ups and downs in life and with MS there seems to be a few extra. Yesterday afternoon the breathing machine lady came to ask how it was working. My wife brought it into the living room and we went over all was working (which is pretty good). I told her I had one problem that initially and putting it on it puts my breath a little too hard and the access would come out of my mouth. She showed my wife out to ramp it down which would stay that way for 20 minutes and then revert back to what the doctor had her begin with. At sounded good. It was working fine on the battery while was in the living room. It has a 5 hour battery backup.
That night when my wife put it on me it wouldn't work and Telling of a fault that it wasn't plugged in to power. It clearly was plugged in and she even tried plugging in an to a different outlet to make sure. So my last night without it which is a catastrophic but for somebody who required it to breathe it would've been a huge problem. I think she was going to call the lady today and tell her the problem. I kind of missed it and it definitely helps me sleep and gives my diaphragm I needed rest. Hopefully it will get figured out pretty soon.
I had a very strange thing happened when I was asleep. When I woke up I found my right here is not hearing very well. I've never had this happen except when it was full of water. I don't think it can be that since I haven't been in water since Saturday. Just one more thing to either ignore or go to the doctor for. It's a real hassle to make an appointment and have my wife miss work to take me. I tend to just muddle through and avoid the doctor visit. My doctors are pretty good but when it's hard to figure out the neurologist says go see your primary care physician in the primary care physician asked what the neurologist said. So I just try to wait and see if it would get better on its own. Not sure if this the best but it's how I deal with things.
That night when my wife put it on me it wouldn't work and Telling of a fault that it wasn't plugged in to power. It clearly was plugged in and she even tried plugging in an to a different outlet to make sure. So my last night without it which is a catastrophic but for somebody who required it to breathe it would've been a huge problem. I think she was going to call the lady today and tell her the problem. I kind of missed it and it definitely helps me sleep and gives my diaphragm I needed rest. Hopefully it will get figured out pretty soon.
I had a very strange thing happened when I was asleep. When I woke up I found my right here is not hearing very well. I've never had this happen except when it was full of water. I don't think it can be that since I haven't been in water since Saturday. Just one more thing to either ignore or go to the doctor for. It's a real hassle to make an appointment and have my wife miss work to take me. I tend to just muddle through and avoid the doctor visit. My doctors are pretty good but when it's hard to figure out the neurologist says go see your primary care physician in the primary care physician asked what the neurologist said. So I just try to wait and see if it would get better on its own. Not sure if this the best but it's how I deal with things.
Monday, July 24, 2017
Weekend update – Breathing, Atlas and Miscellaneous.
I would give a weekend update. We had visitors, Janette's family on a couple different occasions. Friday her sister Joyce and Mike are brother-in-law came over for pizza Friday night. As we were talking Atlas was a little surprised that he was in the center of attention. So he grabbed his new toy which I thought was an otter but I've been told it's a beaver, he flipped it around in the air and then jumped on top of it. He added that is involved and lifted it up and shook it. It was as if he was saying "look at me, look at me, see how much fun I am!"
Eventually someone threw it down the hall for him to patch and he was a happy camper.
Now much on Saturday this time of a rest day for both of us. My wife at a back spasm and took some muscle relaxers and then slept pretty much the entire day. Matt came over so we did a few things like let the dog out and give me my afternoon set of pills.
Sunday was a surprise engagement for my one who lives in Guttenberg. I didn't go for my wife and her sister went long with her mom and aunt. It was vineyard near their. The weather report and not being wrong because it said it would be close to 90. It was in the low 80s so is more comfortable than anyone thought. Matt came over to take care of me, babysit me.
We ended up taking Atlas to the dog park because it was breezy and in the low 80s so I can tolerate it. He loves the dog park but we don't know why because you really doesn't interact with the other dogs. He seems to really like it when they try to get the ball away from him or just in buyer that he has a great toy. He seemed to make friends with a poodle type dog. She wouldn't chase it but she was waiting for him when he got back and ran around him like he was some big cool guy.
So it was a pretty nice weekend overall. It got to enjoy family, pizza, resting and going to the dog park. I've been using my B PAP machine. It's kind of strange because when my wife comes to bad she turns on an LED that I bought so that my face is lit up so I can use my smile mouse. It sort of works even when I have my breathing nose connection on. I call my hose knows and I feel like an elephant. I can turn the pages on my Kindle book this way. For some strange reason though it seems to work for quite a while and then all of a sudden just quit working and I can't turn the pages. At this point I end up just closing my eyes and going to sleep eventually. It drives the engineer in me a little crazy because it works and then it stops and I can't figure out why and fix it. To me it should work the same as long as nothing changes but this just stops working. Maybe someday I'll figure this out.
So I wanted to report a little bit about my breathing machine. It does rest my diaphragm and I'm able to cough up the phlegm that accumulates overnight. This really helps because I used to not have enough breath to clear my lungs. I so run out of breath in the evenings as far as talking. I could try more time on the machine but I hate to do it when my wife is at work. Maybe I will gain more confidence in as we progress.
Thank you again for reading my blog. I appreciate all your thoughts and prayers for me and mine.
Eventually someone threw it down the hall for him to patch and he was a happy camper.
Now much on Saturday this time of a rest day for both of us. My wife at a back spasm and took some muscle relaxers and then slept pretty much the entire day. Matt came over so we did a few things like let the dog out and give me my afternoon set of pills.
Sunday was a surprise engagement for my one who lives in Guttenberg. I didn't go for my wife and her sister went long with her mom and aunt. It was vineyard near their. The weather report and not being wrong because it said it would be close to 90. It was in the low 80s so is more comfortable than anyone thought. Matt came over to take care of me, babysit me.
We ended up taking Atlas to the dog park because it was breezy and in the low 80s so I can tolerate it. He loves the dog park but we don't know why because you really doesn't interact with the other dogs. He seems to really like it when they try to get the ball away from him or just in buyer that he has a great toy. He seemed to make friends with a poodle type dog. She wouldn't chase it but she was waiting for him when he got back and ran around him like he was some big cool guy.
So it was a pretty nice weekend overall. It got to enjoy family, pizza, resting and going to the dog park. I've been using my B PAP machine. It's kind of strange because when my wife comes to bad she turns on an LED that I bought so that my face is lit up so I can use my smile mouse. It sort of works even when I have my breathing nose connection on. I call my hose knows and I feel like an elephant. I can turn the pages on my Kindle book this way. For some strange reason though it seems to work for quite a while and then all of a sudden just quit working and I can't turn the pages. At this point I end up just closing my eyes and going to sleep eventually. It drives the engineer in me a little crazy because it works and then it stops and I can't figure out why and fix it. To me it should work the same as long as nothing changes but this just stops working. Maybe someday I'll figure this out.
So I wanted to report a little bit about my breathing machine. It does rest my diaphragm and I'm able to cough up the phlegm that accumulates overnight. This really helps because I used to not have enough breath to clear my lungs. I so run out of breath in the evenings as far as talking. I could try more time on the machine but I hate to do it when my wife is at work. Maybe I will gain more confidence in as we progress.
Thank you again for reading my blog. I appreciate all your thoughts and prayers for me and mine.
Saturday, July 22, 2017
Some medical updates
Am getting a little impatient about my Ocrevus.. This week I have a booster for the hepatitis vaccine. We don't have a clear answer on when I will get my 1st infusion but I'm ready to go. I'm really hoping to get a roll back so that my right hand and arm start working again little more. Maybe it will be a miraculous cure and I'll be able to get out of my share (yeah right I think that too much to hope for). I have read a few things on Facebook and some of the reactions are significant but not severe and some of them are nonexistent side effects. One guy he was pretty funny and his dog barking in the background and he said he hoped infusion would help his dog with barking at everything. As one of the reasons I want to drive my chair again. Atlas minded me better when I can drive over by him and scold him from above. Now he kind of ignores me and that's is to get a treat off of my lap table. Then the years me pretty good.
Last night he came in and laid with his and on my shoulder for about an hour. Last night and the night before the cat game in and we had both of them cuddling with us. It's always sweet when they both are affectionate.
I've use my BPAP machine for 4 nights now. It is powerful enough that it does my breathing for me and rest my diaphragm. 3 of the 4 days I had enough mojo clear the phlegm out of my lungs. One day I coughed all day though it could never really get the phlegm out. 2 of the 3 nights I can use my smile mouse and turn the pages of my Kindle books. 2 nights it worked okay and then just quit. Not sure why. I did up going to sleep early those nights.
Always find out a significant negative about our well marked insurance that we have to my wife's work. We thought it was a $2500 per person deductible. We thought I had met my $2500. My wife is been online check to make sure and she found out that it is $5000 deductible for both of us together. So my breathing machine won't be paid for by insurance Ike we thought. Oh well nothing ever seems a break our way with insurance. The cost just keep going up and up the.doc couples go up and up and our co-pay goes up and up. Seems hard to believe all 3 facets would go up at the same time. It's not cheap be and sick. I can see why some people go bankrupt.
Well the little girl I had mentioned a while ago that had liver cancer had a great turn and her situation. One day she was supposed to start chemo again because the cancer and come back and was in stage IV.. 20 minutes before the chemo would start she got news that a transplant series of mortgage were available. She ended up needing her lever and 2 other ones at the same time because the connections to her liver were cancerous. She is at some ups and downs waiting to see if the organs were accepted or not and after a roller coaster ride her body is excepting the organs. Sure hope for a great outcome. She is up and walking now even though she is on an IV. She is the wonderful little determined 3-year-old. I call
Last night he came in and laid with his and on my shoulder for about an hour. Last night and the night before the cat game in and we had both of them cuddling with us. It's always sweet when they both are affectionate.
I've use my BPAP machine for 4 nights now. It is powerful enough that it does my breathing for me and rest my diaphragm. 3 of the 4 days I had enough mojo clear the phlegm out of my lungs. One day I coughed all day though it could never really get the phlegm out. 2 of the 3 nights I can use my smile mouse and turn the pages of my Kindle books. 2 nights it worked okay and then just quit. Not sure why. I did up going to sleep early those nights.
Always find out a significant negative about our well marked insurance that we have to my wife's work. We thought it was a $2500 per person deductible. We thought I had met my $2500. My wife is been online check to make sure and she found out that it is $5000 deductible for both of us together. So my breathing machine won't be paid for by insurance Ike we thought. Oh well nothing ever seems a break our way with insurance. The cost just keep going up and up the.doc couples go up and up and our co-pay goes up and up. Seems hard to believe all 3 facets would go up at the same time. It's not cheap be and sick. I can see why some people go bankrupt.
Well the little girl I had mentioned a while ago that had liver cancer had a great turn and her situation. One day she was supposed to start chemo again because the cancer and come back and was in stage IV.. 20 minutes before the chemo would start she got news that a transplant series of mortgage were available. She ended up needing her lever and 2 other ones at the same time because the connections to her liver were cancerous. She is at some ups and downs waiting to see if the organs were accepted or not and after a roller coaster ride her body is excepting the organs. Sure hope for a great outcome. She is up and walking now even though she is on an IV. She is the wonderful little determined 3-year-old. I call
Thursday, July 20, 2017
Music
Night a friend of mine is going to the Nickelback concert. There are a lot of people that don't like them but I never figured out why. I'm not a big fan of theirs I enjoy their songs when they are on the radio. She wasn't sure what I like music wise and it is a pretty long answer so I thought I'd post it on my blog.
In my middle teens, after I got a job, I started buying the Chicago albums. This was my 1st foray into music that was my own interest. I also had a friend who like "underground" rock music. I learned to enjoy some of his music like Fleetwood Mac, Yardbirds and cream.. I also found one Beatles album I like and that was Abbey Road. I never was much of a Beatles fan but that album was really good. Other groups I like then were Edgar Winter and Steppenwolf. About this time my friend Mark started listening to Dylan and I became a fan. I was already starting out with a pretty eclectic group of music that I like.
After I got an iPhone I started realizing I could buy all of these favorites from the old days on iTunes. These fill up about a quarter of my phone music. Then there were a number of years where he became a country fan. It kind of coincided with the layoff in the early 80s and it was nice hearing sob stories in song. I've always been a George Strait fan ever since then. I've downloaded is 50 greatest hits on to my phone. There are other going to groups I like and I added them just to get some balance and my song group. I've also added quite a few songs and artists from the TV show "The Voice". It's amazing how good some of the singers who are that are good enough to win. One of my favorites dad went and that was a little country girl named Daniel Bradberry.
And for number of years my wife listen to Christian songs on the radio. After I got an iPhone I started downloading some of them that I like. One group in particular have a lot of is Mercy Me. Shawn McDonald is pretty good too. I've added a few others just to keep a balance.
So I guess I like classic rock, folk music, some hard rock, some like rock, the blues, country, some Christian.
Others not mentioned that I have enjoyed and probably purchased but didn't mention:
Patsy Cline
Linda Ronstadt
Dolores Riordan
Amy Grant
Garth Brooks
Sawyer Brown
Amos Lee
some Led Zeppelin
I lost some of this music when my hard drive crashed on my desktop. I was able to get most of it back with some was lost for good.
I think music is like art – I don't know what good music is but I know what I like.
In my middle teens, after I got a job, I started buying the Chicago albums. This was my 1st foray into music that was my own interest. I also had a friend who like "underground" rock music. I learned to enjoy some of his music like Fleetwood Mac, Yardbirds and cream.. I also found one Beatles album I like and that was Abbey Road. I never was much of a Beatles fan but that album was really good. Other groups I like then were Edgar Winter and Steppenwolf. About this time my friend Mark started listening to Dylan and I became a fan. I was already starting out with a pretty eclectic group of music that I like.
After I got an iPhone I started realizing I could buy all of these favorites from the old days on iTunes. These fill up about a quarter of my phone music. Then there were a number of years where he became a country fan. It kind of coincided with the layoff in the early 80s and it was nice hearing sob stories in song. I've always been a George Strait fan ever since then. I've downloaded is 50 greatest hits on to my phone. There are other going to groups I like and I added them just to get some balance and my song group. I've also added quite a few songs and artists from the TV show "The Voice". It's amazing how good some of the singers who are that are good enough to win. One of my favorites dad went and that was a little country girl named Daniel Bradberry.
And for number of years my wife listen to Christian songs on the radio. After I got an iPhone I started downloading some of them that I like. One group in particular have a lot of is Mercy Me. Shawn McDonald is pretty good too. I've added a few others just to keep a balance.
So I guess I like classic rock, folk music, some hard rock, some like rock, the blues, country, some Christian.
Others not mentioned that I have enjoyed and probably purchased but didn't mention:
Patsy Cline
Linda Ronstadt
Dolores Riordan
Amy Grant
Garth Brooks
Sawyer Brown
Amos Lee
some Led Zeppelin
I lost some of this music when my hard drive crashed on my desktop. I was able to get most of it back with some was lost for good.
I think music is like art – I don't know what good music is but I know what I like.
Tuesday, July 18, 2017
Breathing Machine and the Dog Park – 2 subjects in one post!
After a series of visits that included the pulmonologist, I was approved for a Bi-pap machine due to my difficulties with my diaphragm and breathing. Their representative came yesterday and hooked us up. I made a big point of making sure my wife knew how to run the thing. Later on I found out that I was condescending when I did this.
Oops, my bad. I wasn't my intention but I just wanted to make sure I wouldn't get asked something at bedtime because my eyesight is not so good anymore and even if people hold things in front of my face I have trouble focusing. So I ended the day being pretty crappy to my wife. Sorry honey I have a brain disease! I'm sure she'll forgive me but I wish I didn't have to be such a jerk sometimes. It's no fun being disabled for me or my wife.
I didn't have very much trouble getting used to the machine. The lady told me that a CPAP is a one on a scale from 0 to 10 and the one I got is an 8. It does my breathing for me and we plan on using it at night so that my diaphragm is not so tired during the day. I used it last night and had no problems. We'll see what the future holds with its use.
Added – there were 4 different masks to choose from. I selected one that goes over my nose and that is the one I used last night. I can still use my smile mouse to turn pages in my Kindle books. Control Fading in and out I have to work on that. Also selected one that discovers my nose but as little tubes that go in my nostrils. It's not it's uncomfortable as it sounds. It only sticks in about a quarter inch. That one seals around my nostrils but I don't think I can turn pages with my book. If I end up using the machine during the day that is the one old probably use. I have a couple of weeks and the representative will come back and see how that's working. So far after one night I think it's good. I have been coughing a lot less today. It may be because I am breathing filtered air.
Yesterday was the last day for quite a while that it was in the low 80s. Temperature and humidity are through the roof now. We took advantage of yesterday and took Atlas to the dog park. There were only about 20 dogs there and all he wanted to do was fetch the ball. He does seem to like it when other dogs chase him but other than that he rarely interacts with them. He loved to go there and starts getting excited and whining whenever my wife gets the bag out that she takes with her to the park. We know he loves to go.
One of the dogs there was there was a 14 week old Australian Shepherd. It still had its puppy fuzz and was so cute. It's kind of weird, but I don't really like kittens, but I like cats. I like puppies a lot and dogs too.
Well I'm running out of breath again so I'm going to sign off and remind you to "be careful out there". Does anybody remember the TV show that's from?
Oops, my bad. I wasn't my intention but I just wanted to make sure I wouldn't get asked something at bedtime because my eyesight is not so good anymore and even if people hold things in front of my face I have trouble focusing. So I ended the day being pretty crappy to my wife. Sorry honey I have a brain disease! I'm sure she'll forgive me but I wish I didn't have to be such a jerk sometimes. It's no fun being disabled for me or my wife.
I didn't have very much trouble getting used to the machine. The lady told me that a CPAP is a one on a scale from 0 to 10 and the one I got is an 8. It does my breathing for me and we plan on using it at night so that my diaphragm is not so tired during the day. I used it last night and had no problems. We'll see what the future holds with its use.
Added – there were 4 different masks to choose from. I selected one that goes over my nose and that is the one I used last night. I can still use my smile mouse to turn pages in my Kindle books. Control Fading in and out I have to work on that. Also selected one that discovers my nose but as little tubes that go in my nostrils. It's not it's uncomfortable as it sounds. It only sticks in about a quarter inch. That one seals around my nostrils but I don't think I can turn pages with my book. If I end up using the machine during the day that is the one old probably use. I have a couple of weeks and the representative will come back and see how that's working. So far after one night I think it's good. I have been coughing a lot less today. It may be because I am breathing filtered air.
Yesterday was the last day for quite a while that it was in the low 80s. Temperature and humidity are through the roof now. We took advantage of yesterday and took Atlas to the dog park. There were only about 20 dogs there and all he wanted to do was fetch the ball. He does seem to like it when other dogs chase him but other than that he rarely interacts with them. He loved to go there and starts getting excited and whining whenever my wife gets the bag out that she takes with her to the park. We know he loves to go.
One of the dogs there was there was a 14 week old Australian Shepherd. It still had its puppy fuzz and was so cute. It's kind of weird, but I don't really like kittens, but I like cats. I like puppies a lot and dogs too.
Well I'm running out of breath again so I'm going to sign off and remind you to "be careful out there". Does anybody remember the TV show that's from?
Sunday, July 16, 2017
Poor Atlas
When we went to Gutenberg on Friday it was the longest we have left Atlas at the house by himself since he started staying with us. It really wasn't that long but it was entertaining when we got home. As we were backing in weird him barking and barking and barking. Then when Janette tried to drive me up the ramp and into the house we sort of got a little stuck making the turn through the door. When we are partway in and partway out Atlas was at the door waiting for us and he started to whine be cause he wanted to see us. He has never whined like that for us. We wanted to take him but we didn't think it was fair to him to keep him in the car that long and not get to run around when we got there. It was pretty sweet that he missed us.
Also when we came in the cat did her crazy cat routine where she chairs around the living room. She attacks her rope tower scratching post and pound on it even though she doesn't have claws in the front. Then she laid down in front of the TV stand. I think she wanted to tease the dog and he came over and poked his nose at her. Then she hit him and he asked even though he did his play bow to sure he was playing. After she batted him a few times he went away. Then she tore around a little more and he watched her ru n behind the TV stand.
That their looking out from behind the TV stand on the right-hand side like a statue. Atlas saw her but left her alone. Then she jumped up on the TV stand and was about knee-high next to that the cable box. We asked Atlas where his kitty was. He get going over to the right hand side the TV stand where he last saw her. Eventually Janette Jordan where the kitty was and she was just teasing him I think and batted his head untill he left. I'm pretty sure she was just teasing him. He still tried to get the kitty to like him but she doesn't want to be friends just want to tease him. Silly kitty!
Don't worry too much about Atlas he got to go to the dog park today. We were going take them yesterday but the temperatures went way over the forecast and were 90°. Today was a little cooler so my wife got up and took him.
Also when we came in the cat did her crazy cat routine where she chairs around the living room. She attacks her rope tower scratching post and pound on it even though she doesn't have claws in the front. Then she laid down in front of the TV stand. I think she wanted to tease the dog and he came over and poked his nose at her. Then she hit him and he asked even though he did his play bow to sure he was playing. After she batted him a few times he went away. Then she tore around a little more and he watched her ru n behind the TV stand.
That their looking out from behind the TV stand on the right-hand side like a statue. Atlas saw her but left her alone. Then she jumped up on the TV stand and was about knee-high next to that the cable box. We asked Atlas where his kitty was. He get going over to the right hand side the TV stand where he last saw her. Eventually Janette Jordan where the kitty was and she was just teasing him I think and batted his head untill he left. I'm pretty sure she was just teasing him. He still tried to get the kitty to like him but she doesn't want to be friends just want to tease him. Silly kitty!
Don't worry too much about Atlas he got to go to the dog park today. We were going take them yesterday but the temperatures went way over the forecast and were 90°. Today was a little cooler so my wife got up and took him.
Saturday, July 15, 2017
A great day on the river
We've had some strange weather here. It's been in the high 80s and low 90s for over a week. Then all of a sudden on Friday it was in the low 70s for one day. Our niece, Steffi, lives in Guttenberg Iowa. It is on the Mississippi River and it became one of my favorite places when I used to have a John boat and I fished a lot. It's a unique little town and is off the beaten path. Our niece and 2 friends opened Starving Artists. It's a small shop with some interesting items and genres to choose from.
He had a grand opening on Friday and our nephew who is Steffi's brother was playing music. I wanted to go but it's usually too hot for me to go places. Since the weather was so cool I decided we could go. There are so many factors I have to consider when traveling and since I quit working I haven't been more than 30 minutes away from our house. Traveling in the car is hard on me because of the back and forth shaking I get. There is also the factor that I need my bathroom sling and I hate to be too far away.. The open house was an hour and a half away. I have not been that far away since I quit work 3 years ago. I thought I was safe with my digestive issues and off we went. My wife put a small pillow on the side of me and that was really great to help with the back and forth. I did not get exhausted like I used to trying to hold myself in place. I just kick back and watch the scenery.
When we got there there is a huge hill and a beautiful overlook of the Mississippi as you enter the town. As always when I see this view my heart speeds up. We enjoyed the open house and the music. There is a lock and dam there and my wife drove me over to the Riverside Park so I can see the river and barges. My only complaint was that I wanted to spend all day watching the river. There's something about being by a river and watching it go by that is calming. It was great seeing Zach and Steffi, and Steffi's little baby. Jake was there with her. He's the father of their baby and he is very attached to her.
So I really great day and have found a way to maybe travel little farther than 30 minutes away. Ashamedly/unashamedly I have to admit I I have become a prisoner of my digestive system. This one of the symptoms of MS that rarely gets discussed because it is and embarrassing symptom. I feel I need to mention it my readers understand something about MS that rarely gets talked about. My wife is great and without her I never would have tried to go yesterday. I am so glad we went and I love that little town.
He had a grand opening on Friday and our nephew who is Steffi's brother was playing music. I wanted to go but it's usually too hot for me to go places. Since the weather was so cool I decided we could go. There are so many factors I have to consider when traveling and since I quit working I haven't been more than 30 minutes away from our house. Traveling in the car is hard on me because of the back and forth shaking I get. There is also the factor that I need my bathroom sling and I hate to be too far away.. The open house was an hour and a half away. I have not been that far away since I quit work 3 years ago. I thought I was safe with my digestive issues and off we went. My wife put a small pillow on the side of me and that was really great to help with the back and forth. I did not get exhausted like I used to trying to hold myself in place. I just kick back and watch the scenery.
When we got there there is a huge hill and a beautiful overlook of the Mississippi as you enter the town. As always when I see this view my heart speeds up. We enjoyed the open house and the music. There is a lock and dam there and my wife drove me over to the Riverside Park so I can see the river and barges. My only complaint was that I wanted to spend all day watching the river. There's something about being by a river and watching it go by that is calming. It was great seeing Zach and Steffi, and Steffi's little baby. Jake was there with her. He's the father of their baby and he is very attached to her.
So I really great day and have found a way to maybe travel little farther than 30 minutes away. Ashamedly/unashamedly I have to admit I I have become a prisoner of my digestive system. This one of the symptoms of MS that rarely gets discussed because it is and embarrassing symptom. I feel I need to mention it my readers understand something about MS that rarely gets talked about. My wife is great and without her I never would have tried to go yesterday. I am so glad we went and I love that little town.
Tuesday, July 11, 2017
Macy and Atlas stories
The highlight of the weekend was the birthday party for Atlas. I didn't do much for except sit out in the backyard and watch all the dogs. It was like being in a dog park with 10 dogs total. Atlas was so worn out after the party it was pretty funny. I think part of its tiredness came from staying up with my wife cooking and getting things ready the night before. Then she got up early to get things ready and so did he. I think he is afraid that she is going to have fun without him. He's a silly puppy – 3 years old now so that 21 in dog years. Is owner is not here because he is deployed to Korea for a year so we didn't know if we could give him a beer or not so we didn't.
Today is Tuesday and it's kind of a blah day. I think I will share some Atlas and Macy stories. Maybe that will improve my mood.
Since I can no longer scratch Macy's ears and chin she does not have much to do with me. Now that Atlas is here she is back in her sullen mood and is rarely seen. Some days I rarely see her. I think that is partly due to Atlas being here and her just bring the cat that she is. Once or twice a week she sleeps on top of me. Atlas is usually on the bed so she has to be within a few feet of him. Mostly she avoids him one my wife is here she is on one side for and he is on the other side. Occasionally gets really frisky and think she wants to play. He takes a toy over to her like a ball and shoves her that her. Then she beats on his nose with her paw, and he thinks she is trying to get the toy away from him and she wants to play. He jumps around and lunges that are and after a while of hitting him she just leaves. He's been around for 2 1/2 years and she still won't play with him. Sometimes he looks at us like why doesn't she liked me, everybody likes me!
Yesterday he was sitting on the end of the couch where my wife was. Is near the front window and if he sits up you can see out. Macy was on the back of the couch near my wife. When Atlas sat up her head and his were about 2 feet apart. I said to him "what the kitty doing" and look at the kitty pup! It was hilarious because he would not even turn his head and look at her. He just hung his head and looked in sad. After a few times of this he got down off the couch. I don't think you'll ever figure out this kitty.
The other day I had Matt one of our sons put me out in the entry room where there are glass doors so I can see outside. Sometimes Macy will come and get on my lap so she can see out better. Instead Atlas came and laid down on the rug in front of the class doors. While he was asleep Macy came out and laid on the rug in front of the garage door so that they were about 3 feet apart. After while he woke up and he was facing her. The whole time she was on the rug she was giving him the stink eye and when he woke up and saw her you just got up and left. She is a me and looking kitty I think and pretty grumpy.
While there was another story I was going to tell but I've forgotten what it was. If I remember I will post it later. Take care dear reader and I hope we have a good day.
Today is Tuesday and it's kind of a blah day. I think I will share some Atlas and Macy stories. Maybe that will improve my mood.
Since I can no longer scratch Macy's ears and chin she does not have much to do with me. Now that Atlas is here she is back in her sullen mood and is rarely seen. Some days I rarely see her. I think that is partly due to Atlas being here and her just bring the cat that she is. Once or twice a week she sleeps on top of me. Atlas is usually on the bed so she has to be within a few feet of him. Mostly she avoids him one my wife is here she is on one side for and he is on the other side. Occasionally gets really frisky and think she wants to play. He takes a toy over to her like a ball and shoves her that her. Then she beats on his nose with her paw, and he thinks she is trying to get the toy away from him and she wants to play. He jumps around and lunges that are and after a while of hitting him she just leaves. He's been around for 2 1/2 years and she still won't play with him. Sometimes he looks at us like why doesn't she liked me, everybody likes me!
Yesterday he was sitting on the end of the couch where my wife was. Is near the front window and if he sits up you can see out. Macy was on the back of the couch near my wife. When Atlas sat up her head and his were about 2 feet apart. I said to him "what the kitty doing" and look at the kitty pup! It was hilarious because he would not even turn his head and look at her. He just hung his head and looked in sad. After a few times of this he got down off the couch. I don't think you'll ever figure out this kitty.
The other day I had Matt one of our sons put me out in the entry room where there are glass doors so I can see outside. Sometimes Macy will come and get on my lap so she can see out better. Instead Atlas came and laid down on the rug in front of the class doors. While he was asleep Macy came out and laid on the rug in front of the garage door so that they were about 3 feet apart. After while he woke up and he was facing her. The whole time she was on the rug she was giving him the stink eye and when he woke up and saw her you just got up and left. She is a me and looking kitty I think and pretty grumpy.
While there was another story I was going to tell but I've forgotten what it was. If I remember I will post it later. Take care dear reader and I hope we have a good day.
Saturday, July 8, 2017
Bucket list?
Since I no longer work I
have little too much time to think about things. Sometimes I think about a
bucket list when I hear about it on TV. I'm not really sure what would be on my
bucket list. I pretty much kayaked anywhere that was worth driving to in this
area. My favorite was Door County Wisconsin and the time on Lake Superior was
awesome and scary
A couple places I always
wanted to kayak but were more driving than they were worth were Painted Rock Park
in Lake Michigan and Isle Royale in northern Lake superior.
Painted rock was kind of
sketchy because there was nowhere to get out of the water for 11 miles. If we
drove all that way and the wind was really high we would not dare go out. That
kind of made it not worth the drive or I would've gone. Isle Royale would've taken
2 weeks to do it justice and the drive really made it just a little too far for
me to want to go.
I always wanted kayak the
inside straight north of Vancouver and also Acadia national Park off the coast
of Maine. Again these were pretty far outside my travel zones. So I don't think
I really missed any kayaking because of my disease that I didn't get to do. So
really none of the kayaking things should be on my bucket list.
Some things on my bucket
list are probably not worth mentioning so I will skip over those. I never
wanted to parachute. I never wanted to go rock climbing. I never want to scuba
dive. I never want to go hot air ballooning. I tend to be afraid of heights. Strangely
though one thing I think I would've tried to do is flying in those squirrel
suits that the daredevils do on TV. I'm sure my wife would never let me do it but who knows? I think I could
do it, I would be in control not a passive participant like some of the other
things I mentioned.
Of course there many places I
would've wanted to hike like the Rocky Mountains, the mountains around
Anchorage. So for the most part I don't feel like I really missed out on
something big that I would've wanted to do if I never had MS.
One of the most difficult
transitions as been since I can't drive my own chair anymore because my right
arm and hand don't work. So if I had one small improvement it would be to get
my right hand back. Of course if I had a big improvement I can get would be to
be healed entirely but that doesn't seem very likely.
So
I guess I would encourage someone who is younger to do some of the things you
want before you get old or have a disease. I'm glad I did many of the things
like trout fishing, traveling to Yellowstone and many the kayaking trips I
took. Bike riding with my wife was a big one too. That's all for now and take
care dear reader.Friday, July 7, 2017
Psalm 19
I've been reading in Psalms lately
or more correctly I computer has been reading Psalms to me that I try to follow
along. I have recently gone to Psalm 19 and thought this would be a good Psalm
if you are only going to read one. I included the 1st verse, a middle verse and
the end verse. I have found this Psalm very encouraging.
http://bible.us/1/psa19.1,7,14.kjv
One thing I found about reading in
general is that I am transported in time and space mentally when I read
something good. Some of like that but the Bible is in a league of its own. I
originally started reading the Bible when I was 24 and I was more than transported.
It was as if the verses I read were tailored just for me. You'll notice one of
the verses I included that the testimony of the Lord is sure. I remember
starting to read the Bible that I would have ammunition to disprove it. One
night I realize this book was more than just a book. Not only was it the truth
but I realized it was God speaking to mankind and me especially.
I went from being a mocker of
Christians to becoming one. Jesus changed my heart and is given me a peace that
passes all understanding as it says in Philippians. I cannot emphasize how much
the Bible is meant to be since I was a young adult. My hope is that someone who
reads this will look into the word and find Jesus.
Psalms 19:1, 19:7, 19:14
1 The heavens
declare the glory of God; and the firmament (The earth) sheweth his handywork.
7 The law of
the Lord is perfect, converting the soul: the testimony of the Lord is sure,
making wise the simple.
14 Let the words of my
mouth, and the meditation of my heart, be acceptable in thy sight, O Lord, my
strength, and my redeemer.
http://bible.us/1/psa19.1,7,14.kjv
Thursday, July 6, 2017
MS – problems lately and some ways I deal with this disease
I'm pretty sure that today is Thursday. The holidays always mess me up and I have to think real hard to remember what day of the week it is. I haven't posted much lately partly because I'm not alone to use my voice software. Another reason is that my eyesight makes it difficult to read the small print that my voice software uses. I tried changing the default size but it just kept going back to what I have now. I got tired of fighting it, but my eyes have some problems with focusing both eyes on the same thing, and having to lean back in my chair because I can't hold my head up anymore make posting difficult and proofreading almost impossible.
It really annoys me when I read what I posted and I find a bunch of mistakes with words that seem impossible for my voice software to screw up. It really doesn't do pronouns very well. I know you all read past these and I appreciate it but I still find it frustrating. It's very difficult to change.
I'm again plagued by problems remembering. I think of things to post and then I forget what they were by the time I'm in my chair.
My friend Bruce came over the other day and he said he doesn't know how I deal with this disease and my dependence on others for everything. I told him there are a lot of people who have it worse so I feel guilty complaining. I told him about this beautiful little girl named Evie who is 3 now. She had liver cancer and it went to stage IV last week. It is so advanced she needs a complete liver not just part of a lobe. The next day she was going to start chemo because there was no transplant available. 20 minutes before her chemo would start they got word that a transplant had become available. The amazing thing is that if she'd started chemo she wouldn't be able to have the transplant with the drug in her system. She had the surgery which lasted 7 hours and she is doing pretty well.
There were others that I mentioned like one of our neighbors deceased husband had MS for years. She is retired and 80 years old and for 20 years her husband was blind due to MS. I also mentioned a young man in our church who has relapsing MS. I can't imagine living with the ups and downs of that kind of MS. My kind is considered worse because more people with my type end up in wheelchairs and such, but I didn't get any symptoms until I was close to 50. I can't imagine living with wondering every day if my MS would make me disabled for one day or one year, there's no way of knowing with that type.
I told Bruce my friend that it's hard to complain when I'm so well taken care of and there are others with much bigger burdens than I.
It really annoys me when I read what I posted and I find a bunch of mistakes with words that seem impossible for my voice software to screw up. It really doesn't do pronouns very well. I know you all read past these and I appreciate it but I still find it frustrating. It's very difficult to change.
I'm again plagued by problems remembering. I think of things to post and then I forget what they were by the time I'm in my chair.
My friend Bruce came over the other day and he said he doesn't know how I deal with this disease and my dependence on others for everything. I told him there are a lot of people who have it worse so I feel guilty complaining. I told him about this beautiful little girl named Evie who is 3 now. She had liver cancer and it went to stage IV last week. It is so advanced she needs a complete liver not just part of a lobe. The next day she was going to start chemo because there was no transplant available. 20 minutes before her chemo would start they got word that a transplant had become available. The amazing thing is that if she'd started chemo she wouldn't be able to have the transplant with the drug in her system. She had the surgery which lasted 7 hours and she is doing pretty well.
There were others that I mentioned like one of our neighbors deceased husband had MS for years. She is retired and 80 years old and for 20 years her husband was blind due to MS. I also mentioned a young man in our church who has relapsing MS. I can't imagine living with the ups and downs of that kind of MS. My kind is considered worse because more people with my type end up in wheelchairs and such, but I didn't get any symptoms until I was close to 50. I can't imagine living with wondering every day if my MS would make me disabled for one day or one year, there's no way of knowing with that type.
I told Bruce my friend that it's hard to complain when I'm so well taken care of and there are others with much bigger burdens than I.
Monday, July 3, 2017
Pride – I asked the question
I have been hearing about pride day and pride parades. And I've always wondered why I can't be proud of the fact I am a heterosexual. Someone posted an article about the Prime Minister of Canada marching with a pride parade. Their article was about how wonderful it is to be accepting of people no matter what.
I must've been bored that day because I posted the question "Can I be proud to be a heterosexual male?" I was in no way prepared for the response I got. It stated that no, I could not be proud because pride was for LGBT because they've been bullied for so long. I pointed out that I was bullied all through junior high and most of I school because I was small.
The responses were so harsh I was stunned. LGBT are not accepting of me. All I saw was a hatred of me. When I questioned why they weren't accepting of me I got an even harsher response.
I guess I'm a little naïve but I was stunned by the answers and ended up just deleting my post on that Facebook post. I guess I no longer feel accepted by LGBT's in any way shape or form. I guess they're the only ones who are allowed to be bullied and have and have it count.
And from now on I will not be looking for acceptance by them and I also will not be accepting of them. One would seem to go with the other and since I am in a hated group I guess I will not be tolerant anymore. Thank you LGBT community for making this clear to me..
I must've been bored that day because I posted the question "Can I be proud to be a heterosexual male?" I was in no way prepared for the response I got. It stated that no, I could not be proud because pride was for LGBT because they've been bullied for so long. I pointed out that I was bullied all through junior high and most of I school because I was small.
The responses were so harsh I was stunned. LGBT are not accepting of me. All I saw was a hatred of me. When I questioned why they weren't accepting of me I got an even harsher response.
I guess I'm a little naïve but I was stunned by the answers and ended up just deleting my post on that Facebook post. I guess I no longer feel accepted by LGBT's in any way shape or form. I guess they're the only ones who are allowed to be bullied and have and have it count.
And from now on I will not be looking for acceptance by them and I also will not be accepting of them. One would seem to go with the other and since I am in a hated group I guess I will not be tolerant anymore. Thank you LGBT community for making this clear to me..
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